EDITORIALS

Patients, people or partners?

OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…

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EDITORIALS

Do No Harm!

Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…

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Profile photos of four smiling OI-researchersCONFERENCES

OIFE INVESTIGATOR MEETING 2022

SAVE THE DATE – 1st VIRTUAL OIFE INVESTIGATOR MEETING November 18th 2022, Online The umbrella association Osteogenesis Imperfecta Federation Europe (OIFE) is together with members from the Medical Advisory Board of OIFE inviting you to save the date for the very first European Investigator Meeting for osteogenesis imperfecta (OI). This virtual one day meeting will…

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RESEARCH

The OIF Geisman Grant

The Osteogenesis Imperfecta Foundation (OIF) awards Michael Geisman Fellowship grants to post-doctoral trainees who are currently working on projects with clear relevance to OI, or who have projects that will enable them to develop expertise in OI research. Investigators from other countries than the USA, can also apply. The application cycle is now open and…

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EDITORIALS

More than just a survey!

We know you hate surveys. We truly do. Every time you buy an object, order take away, online grocery or come home from a holiday, you get a survey. Are you happy? Unhappy? Do you have something to complain about? Would you like to recommend our app? Do a review? Please, please, please provide us…

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ADVOCACY

The IMPACT Survey is live – spread the word!

The IMPACT Survey is a joint initiative between the umbrella organization Osteogenesis Imperfecta Federation Europe (OIFE), the OI Foundation & the pharma company Mereo BioPharma. Together we’re delighted to announce that English version of The IMPACT Survey is now live and will be running until 10th September 2021. Next week we will also launch the survey…

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ICCBHCONFERENCES

OIFE co-hosts at ICCBH Virtual Forum

The International Children’s Bone Health Conference (ICCBH) is hosting a virtual forum from November 18-20 and we encourage professionals and patient representatives to attend. Target group The meeting programme of ICCBH Virtual Forum is designed for healthcare professionals and researchers.  Pharma industry regulations do not allow open invitations to members of the public to attend. However,…

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EDUCATIONAL

OIFE at EURORDIS Winter School

EURORDIS launched Winter School with the aim of deepening patient representatives’ understanding of how pre-clinical research translates into real benefits for rare disease patients. The training equips participants with knowledge and skills so they are empowered to effectively participate in discussions with the researchers, policy makers and companies responsible for research or research infrastructures. The 2nd edition…

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ADVOCACY

Call for proposals for research projects

The European Joint Programme on Rare Diseases (EJP RD) has made a preliminary announcement about the upcoming 2020 call for proposals for pre-clinical research to develop effective therapies for rare diseases like OI. A number of national and regional funding organisations will participate in the call, alongside the European Commission and the EJP-COFUND action, to…

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